Tuesday, January 1, 2013

MS-The Dinasour In The Room

Soon after my last post upon return from three weeks in the hospital, I worked diligently daily to provide my core with enough strength to sit upright. The first move, the toughest by far, was getting out of bed. Sounds simple right? Notta. Imagine lying on top of a gorilla and heaving you both out of a supine position. Whilst red hot poker sticks are being jabbed into your lumbar. This is just a smidgen of what my morning entails. Not including the dignity I have lost to good hearted caretakers, but I was trying to build up this strength for not only obvious reasons, but to be able to withstand a flight to Florida. My parents have a home in Melbourne, and I go where my "caretaker in a cast goes." Period! This is the hand that has been dealt and I really haven't a choice other than to play it out.
Once out of bed and feeling every tortous movement, I was gate belted and assisted to the wheelchair, equipped with the morning icepack and lumbar support, a homemade creation, then wheeled over to the stairs where I would sit backwards while holding onto the stair above and hoist myself up 5 stairs one by one resting on each stair in a sitting position. Now you're cracking up because who can't simply sit? Me. That's who. This glorious disease has weakened my core to the point I cannot sit unsupported . The three surgeries provided also much needed additional pain and influence over my condition! Thanks to the generous amount of spasm and spasticity and the failing of oral baclofen it really left no choice to fix this baclofen pump, which by the way will be covered in another blog as I feel Medtronics misrepresents the pump entirely and can be included in "Big Pharma!
Anyway, on with the story. Two nights prior to the flight I was shitting bricks. How can I go to an airport, sit, wait, go through security, sit, wait, go to the terminal, sit, wait, and then get on one of those horrible airline aisle chairs that we lucky handicappers get to ride strapped in like a piece of meat and banged all around, when I can't even sit upright? Wow that is impossible, as I lay perplexed and pained I received a text from Kim who has been in charge of keeping my hygiene at high standards with a wonderful idea her and my sister conjured up. Sleeping in a hotel room next to the airport and cruising to the terminal like O.J. did in that Hertz commercial years ago, well not exactly, but the idea could cut about three hours of sitting time out, and leave me just enough for the flight. I managed by the day of the flight to build up three hours of sitting tolerance. I am not talking about comfortably relaxing on the sofa, I am referring to three hours of digging so deep into the depths of my core and mind over matter compartmentalizing the pain. It was either get to Florida or be stuck in the house in freezing cold icy weather every day with poor Mom who was on her last nerve. I wanted to stay because I figured a few more weeks and she would put me out of my misery anyway, as she hates winter more than anyone I have ever known! The other option was a 24 hour ride in an RV bed. No thanks!
So to spare a ton of details lets fast forward to the plane where after taking the shitty ass isle chair and being slung into a seat the 757 taxis back after an hour of boarding. My calculations tell me I had enough in me to get to Orlando and I will lay in the back of the car to the house. However, I neglected to factor in the mechanical problem with the left engine that burned two hours of my available three, and forced a deboarding of the plane. Yes once again the black cloud prevails, and my three hours was up. It was back in the aisle chair and return to the terminal where my only hope was western medicine. Yup, Vicodin , Valium and the like, until something wonderful should appear, the aisle chair guy and his compadre with news of the availability of another plane, and right away! Oh there is a God I proclaimed, and before you knew it we were on board and on our way to sunny Florida, where the heat intolerance will have me right back in bed! Oh yes there's always a trade off with MS and its about the lesser of two evils. At least there is no snow or ice and curb cuts are everywhere allowing wheelchair accessibility. In this case it was get out of dodge but still take the dinasour. Where was I to find three more hours in this body? The dinasour story ran through my mind : A certain family had started putting up a nativity scene in their front yard. All of them were carrying out the little statues to put in the nativity scene. Finally everything was in place - Mary and Joseph and the manger and the baby, and angels and shepherds and all the barnyard animals. Then little Scott came out carrying one of his favorite toys, the figure of the fierce Tyrannosaurus Rex, king of the dinosaurs. It was one of those plastic figures that you inflate, and in comparison to the other figures it was an enormous thing, towering over them all, and certainly not something to have in a nativity scene. The Dad said, "I tried to tell him, ‘Scott, you have to take that back because it doesn’t belong there. Dinosaurs existed thousands of years before the baby Jesus, and it just doesn’t belong in a nativity scene.’"But little Scott insisted, so they finally put it there behind all the other figures - a fierce dinosaur hovering over the manger and everything else.Then he said, "As we stood back and looked at it, we realized that maybe that dinosaur says more than we realized. For over each of us there is this menacing character that threatens to rob us of all our joy and peace and cheer."My friend and pastor shared that story with me. His take is that the baby in the manger is stronger than any dinasour in our lives, but from my perspective T-Rex is kicking my ass, and hanging over me with a grip that feels much stronger than any higher power. But then what the hell do I know, accept for the fact that somehow, someway I survived the travel (7 hours upright) with that big nasty T-Rex! I have tried several times to replicate sitting that length and cannot come close. After two hours in my special chair I am back in bed. Maybe Father Teodor has a point. Maybe that day that little baby in the manger helped me to declare victory!? I just hope that little guy continues to follow me as well as my family and that he did'nt take the return flight back to Detroit, if he really even was on board afterall!?

13 comments:

I won't patronize you with a saccharine Happy New Year. Except. Except that that is what you deserve. I am so sorry life has thrown such a wrench into your ability to live the kind of life you deserve. I don't know where you can find it, but I hope you can find a glimmer, at least, of hope in this new year.

MS is taking the Greek down. His suffering has been terrifying especially for those of us who love him. He has been in agony, bedridden, but always keeping that beautiful spirit that he has, and still trying to fight the monster. For those of you who understand, think of him.

The Greek is on his final journey. He is making his transition to the next world that I hope will be kinder to him than this one. Soon, when he has finally ended this sojourn, I will post his final words. Me, his Mom , who loves him beyond all words.

I've had George in my thoughts and prayers for a while now and I am so sad to hear of his pain and suffering. George was a old college friend and he was one of the sweetest and kindest people I knew. I will continue to pray for him and for you.Krystin Kennedy